Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

.

.

I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

.

.

Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

.

.

Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

x

.

P.S. Here’s a version in multiple languages. Just because. 😉

.

National Poetry Day in the UK

The Now

.

I’m having a transition

I don’t feel quite right

It’s not bad

It’s just…

The full extent is not yet in sight

 .

I’ve tried to put it into words

But they only show the edge

The words are right

The truth is there

But I can’t see past the ledge

So

What I think is happening

Is only half the tale

Or less maybe –

I just don’t know how deep the scale

 .

I think I’ve passed another milestone

Or I can feel it by the way

I yearn to peek

And see what’s what

But a day still lasts a day

 .

I cannot rush to find out

I can only live each day

The Now

That’s when I like to be

No peering in the grey

 .

This trembling within myself

Has not yet reached my brain

The body knows

But I do not

And

I must not entertain

Speculations

That might not help

They are not my realm

The Now is home

The Now is mine

And I am at the Helm

.

x

Suicide, the difference between wanting to kill yourself and wishing you didn’t exist

Contact with fellow patients who are currently feeling suicidal is part of the norm for many patients with chronic conditions. Anyone who’s been there ‘gets it’ and if we’re strong enough to support without our own coping mechanisms being compromised then of course we do so. Because we’ve been there. And though we each have to dig ourselves out of the mire it helps when there is someone out there saying “I believe in you”.

The reality of suicidal thoughts is not that someone wants to ‘kill themselves’, the thought of having to do the ‘killing yourself’ part is horrible so you want to find the least horrific way to do so. The ‘killing’ bit is not the point. The point is that someone who is considering suicide can see no way forward. No way out. Their situation has become so overwhelming that their coping mechanisms just can’t balance everything out. This is not a failure on their part. And if you’re reading this and you feel like this right now – this is not a failure. It is human and understandable. And you are not alone in this, there are people out here who understand how you feel and why you feel this way.

It is also not something to be ashamed of. It is understandable that someone with health issues that are changing their life, to the extent that they don’t feel like it actually is their life any more, feel this way. With pain levels so high that is impossible to think, to function or to see further than the darkest of times that currently make the light seem like nothing but a long lost memory. And not just pain. Crawling along the floor because your body is trying to make you pass out. Feeling like you’ve just won a medal because your body has actually allowed you to have a poo and this time you actually didn’t end up on the bathroom floor with your body temperature going through the roof, stomach thinking it should vomit right about now, body wanting you to lie down or it’ll make you faint and meanwhile you watch the room spin and spin whilst your head throbs so hard you just wish you’d pass out and miss having to experience this bit. I mean seriously, when your life has changed so much, no wonder you’re left reeling. And no wonder you just want to opt out. Many fellow patients know about this. You are not alone.

Time and again I’ve heard fellow patients echo my own words from years before, “it’s not that I want to kill myself, it’s just that I wish I didn’t exist”, “if I could just choose to not wake up…”

If you’re feeling this right now, I get it. I understand. I’ve been there.

As Rellacaffa also pointed out, society tends to say “Shhh! You don’t talk about suicide“. And you know what? We should. To not talk about this is to leave all those experiencing it feeling alone, forgotten, left on the sidelines and with no way out other than the very final way. Seriously the number of people who have been through this is huge. And to come through it is truly hellish but, trust me, when you start to build that way-out the light begins to seep in again. There is another way.

And you are not alone. (If you’re feeling these things right now I’m sending you a hug right here, xx)

When I realised just how different wanting to kill yourself is from wanting to not exist, I got stubborn. Why should I be stuck looking at opting out in such an extreme manner when I knew that the situation had overwhelmed me so utterly that my coping skills just weren’t enough any more? Why should I be put in a position where I’m considering giving in, how dare the world work that way? So I decided that I needed to take a new approach or things were not going to change.

When you hit rock bottom you are faced with two glaring options a) opt out, or b) refuse to opt out. But if we want to refuse then things can’t stay as they are. It’s that simple. Things have to change. So the options really are: a) opt out or b) change things.

With our coping mechanisms so severely outweighed the changes have to be of importance to us. And when we reach such an extreme stage in our journey we have to be prepared to take a step back and be honest with ourselves about everything. We get our head to separate out different aspects of our life and allow our heart to be honest with us on each one. Then we have to make a decision about what needs to change. What is most important to us. What will keep us alive? What will make us want to stay alive?

For me my change was to upsticks and move home. Which seems massive when in that state but it was what my assessment of my life at the time led me to and frankly if it’s going to stand a chance of changing things so that the coping mechanisms stand more of a chance of balancing things out then it’s worth it. I had been continuing to live in an area that I used to work in. I had already managed to get my mentally abusive boyfriend to finally go away. (It’d only taken about a year of asking him to go and him refusing. Yep, I was that run down that I couldn’t even call the shots on my own relationship, doh)! And the subsequent fleeting boyfriend had opened my eyes to what life could be like if there was someone who wanted to spend time with me and even help me get out and do things. That realisation that another life was possible was what tipped me over the edge once I was back in my isolated existence again, but it’s also what drove me to push for the changes. I wanted a life. I accepted my health issues, but I did not want to accept the unnecessary additional negatives too.

For others the main change might be having to give up work to remove some of the stress levels and allow for better pain management, or contacting the local pain management team to ask about training in handy psychological tools for patients with chronic conditions. Certainly a change of focus is required and we need to point ourselves firmly in the direction of life and refuse to dwell on health stuff. I mean we obviously have health stuff in our faces all day every day, but there’s a difference between productive temporary thinking and circular negative thinking. The first can be useful when required then put to one side so that life can happen, the second takes over our continuous present so that life gets squished out of the picture. We deserve to have an existence that we want to hang onto. So we need to figure out what it is that we want to hang onto and what it is that prevents us or makes us feel like we don’t want to hang on. What is it that lifts us that we can get more of by changing something? What is it which brings us down which we can remove or change so that we are not quite as overwhelmed?

Talk to someone you trust, whether near of far, allow yourself to put what you feel into words. If there’s no-one you’d feel truly comfortable doing this with then contact a support line, or get referred to a clinical psychologist (often also available through pain management teams) who can help you to gain handy tools and to figure out what needs to be changed. You deserve this support. You have a right to this support. It is part of the health issues you face and you do not have to do this bit alone.

I know many fellow patients who have also been through this. And their strength and optimism probably means that others do not realise that this is a part of their (our) past, but coming through this has that effect. We are stronger, we know ourselves better, and quite frankly when you’ve stared that option in the face and found another way instead then you know that you can handle anything that comes your way. So there isn’t just another way, it is one heck of an amazing path that can lead you to places you currently can’t see or imagine, but we all started where many patients are now. Where maybe even you are now. We were there. We understand. We ‘get it’. You are not alone and there is another way.

Love and strength,

x

.

Additional links for medical staff:

Experienced nurse in multiple areas, Isy Aweigh writes here on some hugely important tips and insights for medical practitioners with potentially suicidal patients.

Michael Negraeff, MD, wrote last month of an experience with a suicidal patient here, and his thoughts link in with Isy’s article above.

CRPS – Frequently Asked Questions

I help out as part of a multi-disciplinary admin’ team in a couple of online support groups. One of the groups has had such a fast increase in membership that we found ourselves trying to keep up answering recurring questions a lot of the time. As we admin’s are also working around our on CRPS, co-morbidities, flare-ups etc we found that the amount of repetition required was taking more time than we could manage to function in per day.

So, the plan was to create an FAQ with a list of themes with various links, snippets of information and so on, so that instead of repeating ourselves and posting loads of information every time the questions came up we could instead say “hey, that’s in our FAQ, feel free to go and have a look”. And it seems to be working well. Now a few lines to direct the questioner towards the FAQ enables us to share lots of information without compromising our own healthcare in the process. Organised, or what?! 😉

But that’s just within that one support group, and until my peers and I get the charity website up and running there’s nowhere else that our fellow patients from outside the group can access these links. Plus even if the file gets shared it’ll soon be out of date as new links are added all the time. So I’m going to add the FAQ here in the meantime. My fellow admin’s are working on other areas to add more info’ and links to what I’ve gathered here so far and I will make sure that it all ends up available online (the charity webbie is being created so we’re getting there slowly despite the health restrictions).

I’ve just uploaded the FAQ. It is not finished (with this condition is never will though of course as knowledge is always moving forwards) and it is a bit rough and ready at the moment, mostly still in raw links (some of which aren’t working as links at the mo’ so for those ones just highlight the website address, right mouse click ‘copy’, and then right mouse click into your browser address bar and right mouse click ‘paste’). I’ll pretty it up when I get to but as I have a long CRPS advocacy To-Do list at the mo’ I decided that prettifying can wait – it’s more important to get this info’ out there and available.

Here’s the new page:

CRPS Frequently Asked Questions (FAQ)

As always, any suggestions for additions, feedback etc is always appreciated. This is to help our fellow patients so I always welcome input.

Much love from me, x

Something I didn’t think I could do…

For the photo challenge today…

I wasn’t entirely sure if I’d make it through my studies without the health getting impossible, but if I didn’t think that there was a chance of success then I wouldn’t have embarked upon that final module. So I have to think of something that I genuinely thought that I couldn’t do, which is nigh on impossible for me because I am one of those people who doesn’t believe in capping potential… who knows what we can achieve in the future? The last thing I’m gonna do is assume that I can never do things because then I’ll never try, and that’ll make it true whether it could have happened or not. So there is nothing that I think I can never do. Instead I work within my current health restrictions doing what I can and I enjoy the ride.

I enjoy the ride because living in the present is joyous. Okay yes, so there’s pain and crawling along the floor with my head spinning and such like, but there are also cups of tea, hot water bottles, sunsets that I can see through the window and much more. Why worry about my future? That’s not going to help me right now. Don’t get me wrong do I plan for my future, I just don’t allow myself to worry about it. I could worry about my health deteriorating, but even if I knew for sure worrying would only make the present feel worse. The thing with CRPS is that it is changeable. Change is built into the very fabric of how the condition works. And change can go either way: so some of my symptoms might improve. My pain management is in a whole different world to where it was years ago. My pain and my condition continues, but the way the pain and I dance around one another is more patterned than it used to be, we have a kind of truce. Neither of us is backing down, but there’s an ‘agreement’ of sorts! It allows me to plan for some activities and events that I could not have done in the past. I will pay for it in pain levels, but I plan for that too.

So who knows what we can accomplish in the future? And if that’s the case, why not start now? Losing old patterns of living, active abilities, friends who can’t handle the changes… well, after getting over the initial crapola that creates we then start to think things like… “What is really important to me?”, “What can I do for me that gives my life smiles and personal value?”, “What can I try that might help distract myself from the pain a little bit?”. And that’s when we discover a new feel to life and start creating our own new pattern. Some of us rediscover lost skills or hobbies and some of us discover new ones.

So when asked for a picture of something I did not think I could do, I just don’t think that way. For me it’s about something I did that I never knew I would do, with the emphasis on the not knowing it was in my future rather than not believing it was.

When we start creating our own new way of living within our current (but potentially changeable) conditions of living, it is a process of exploration and discovery. When I started new things (like this blog) I always said that I don’t know where it will take me but it will be interesting following the path and finding out. And the blog has taken me down paths I didn’t know were in my future. (You can see the blog for yourself though, so I guess a piccy of that would be a let down)!

When I was at a physical low a couple of years ago, I had to stop doing my twice weekly physio’ sessions at the gym because the Dysautonomia had become a real problem with trying not to pass out and/or throw up whenever I tried to exercise, and I felt really down about it. I handled it well for the first few months even though I knew I’d have a lot of ground to regain, but after two years it was a real concern that I could not get the physio’ that my legs required to keep to the delicate balance of activity and rest that affects pain levels. To my regular readers – please excuse me for mentioning my beloved Tai Chi again (;-) !) but for those who don’t know… Tai Chi is what I started doing in a slow-mo attempt to get my body doing some different activity twice a week. What I hoped was that it would help me get back to the gym and what I found was that I really enjoyed learning it so I knew that when I got back to the gym I was not going to give up the Tai Chi. That was it, though, the extent of my expectations! I just wanted to learn more Tai Chi and improve over the years. I knew that it would be a very handy health tool for my crinkly years if I could keep it up for the rest of my life, so that was the plan.

Instead, as regular readers will know, it took me down a whooooole different path!

I still cannot get back to the gym, but the Tai Chi (thanks to my awesome teacher who saw and nurtured my potential, encouraging me every step of the way) led me to perform at a Chinese new year celebration wearing Professor Li‘s purple silks (passed down from him to student, to student’s student, then loaned to me 🙂 ). ‘Thanks’ to my CRPS journey I’m now pretty good at living in the moment which helps to keep the stress levels down (which helps calm the Dys’ symptoms). From my teacher’s point of view I demonstrated that I performed well under pressure, whereas from my point of view there was no real pressure from an audience coz the bigger problem was keeping my symptoms under some semblance of control! So really I demonstrated that I know how best to work around my condition to get a few minutes of apparently able-bodied performance! Because of this, my teacher took me to my first national tournament (ladies beginners class) where I shocked myself completely by winning gold. Then she took me to a different national tournament a couple of months later (this time a bigger classification group as all men and women were competing against each other) and I amazed myself by winning another gold. It opened my eyes to potential that I didn’t know I had. It’s been the most unbelievable year in the most literal sense because I still have trouble believing that all this really just happened to me!

That’s the thing about potential, it lurks sneakily just off to one side and it has no visible limits, It’s the exciting unknown, and the key is to travel the path enjoying each new achievement along the way because wherever those limits may be.. a) limits can be tested and we can improve, and b) aaaall achievements along the way are to be celebrated.

x

An inspiring friend

Today’s photo challenge is to share with you someone who inspires me when the going gets tough. Living online as well as off it has allowed me the wonderful opportunity to meet people I could never have met otherwise. The number of phenomenally inspiring people that I have the good fortune to know has risen rather sharply these past few years. 🙂

Today I have chosen to mention one in particular. Oceans separate us but we feel as if we have known each other for many years already. One of those friendships where you just ‘get’ one another, where each time we speak it’s like no time has passed, and yet the time between speaking still twangs at the heartstrings. We met courtesy of one of our health conditions, CRPS, so it’s been pretty darn good for something eh?! 😉 We had overlapping friends and ended up being admin’s in the same support group. Some of the admin’s decided to get together in a Skype chat, and that pretty much sealed the deal then and there! Seeing and hearing friends for the first time who have been loving and supporting one another but had never actually met in the 3D world was emotional, but in a good way. There were smiles and tears at the same time. The love, the understanding, the wicked senses of humour, all together in my laptop, right in front of me! It was a turning point for our understanding of friendships up to that point. 🙂 (You’ve met one of these awesome ladies in one of my earlier posts).

They’re my sisters, not by blood but by heart, and there are other friends who I would love to draw into this warm friendship group because their insight, their hearts and their humour would fit in so well. Ahhh, happiness!

Well anyway, there’s this one gal, right? She’s called Lili. She has a big bit of my heart that she’s settled into, and she’s there to stay. She’s ridden the rollercoaster ride of multiple severe health conditions her entire life. And despite the extremes she has had to go through she hasn’t lost her big warm heart, or her deep love and concern for others of any species.

Recently the lovely Lili started a weblog for her book which is in progress. With severe allergies her amassed knowledge of alternatives to chemical medications and anything else that could possibly have allergens in it, from foodstuffs to washing soaps is, quite frankly, phenomenal. Much of it is there in her head for instant retrieval because it is such a part of everyday life. I cannot begin to describe how pleased I am that this book of information and alternative treatments for chronic pain is in progress. Lili’s understanding of chronic health issues from pain to immune issues and beyond is so very valuable, and I am glad that the book will be available in the future for us fellow patients to dip into for insights that can help us.

(I keep saying that I want a signed copy, it’s my ‘excuse’ to meet the author in the 3D world! 😉 )

Whilst the book is in progress Lili is writing a blog alongside it with information, insights, tips and more. The style of writing is easy on the brain and the author very quickly becomes familiar to the reader by her style and trust me – that’s her shining through. There’s nothing contrived about this gal!

So here she is, the one, the only….. Lili …(and a very cute baby goat)…

You can find Lili’s blog here: The Taming of the Beast, and the piccy is from this blog post.

Inspiration

The online Facebook community of CRPSers has recently been asked to write their own inspirational stories for possible inclusion in an “Inspirational CRPS Story Book”. I chose to write about the Tai Chi rather than the academia simply because physio’ is a need that we all have as a crucial part of our pain management, and the possibility that it could be less of a chore and more of a joy is pretty darn cool! 🙂

I have been advised by the lovely lady putting the book together that it’s fine for me to post this on my blog for my readers to see. So this is what I wrote….

.

Inspiration is one of those words that won’t be pinned down. You can’t point at it and say “see, look… that is an inspiration” in the same way that you could point out a chair or the colour lilac. Okay, well you could point at something that you find inspiring and say that, but the person you’re talking to may disagree, or they may feel inspired in a totally different way.

And it’s not only a personal thing, it’s also an out-of-the-blue thing. When we feel inspired by something it is usually something that happens in a moment, or it’s crept up on us somehow and we become aware of it in that moment. It is a response that involves our emotion through personal interpretation. It often links in to our own joys and pleasures in life, our dreams, our morals, our hopes. Maybe we saw a picture that we found inspiring… perhaps it made us feel good about the world and want to do more good ourselves, or it inspired us to paint, or move home, or phone a friend that it reminded us of. Inspiration can come from anywhere and at any time because it comes from within. It is often sparked by something external, something we’ve seen or heard perhaps, but it can also be sparked from within – our own thought process can lead us to inspiration. Inspiration is so wrapped up in who we are and how we interpret what we see, hear and feel.

If someone says “you should try this…”, it’s not inspiring on its own. But if it sparks your interest, gets you intrigued, makes you feel inspired to do it, then that’s a different thing altogether from just trying it because someone said that you should.

If we are inspired to do something, if we are interested, motivated and involved in what we’re doing, then we are also more likely to see it through. Mind you, I say that as someone who keeps trying to find the time to get back into my artwork but failing to see it through. It’s not that I’m not inspired so much as that I don’t set aside time to allow myself the enjoyment of it because it takes up valuable activity time which I usually need to complete mundane tasks like cooking or washing dishes! I know what I want to paint, I just keep ending up crossing other things off my ‘to-do’ list instead. Being inspired is one thing, but making time to enjoy that inspiration is a decision that is easy to push away. I know from personal experience!

Just about two years ago as I write this I was inspired to continue with something new. Starting it was more owing to necessity, but feeling inspired to continue, now that’s the magical bit!

My CRPS story is a long one so I will not recount it in any length. It’s been nearly 14 years since injury and onset as I write this. It took 6 years and many medical roundabouts to get a diagnosis, and with no medical support or knowledge of the condition whatsoever it took me about 10 years from injury before I began to find out that it is much much more than ‘just’ the second most painful condition known to medical science (after terminal cancer of course <3). So suffice to say it includes screaming pain, wishes of no longer existing, loss of friends through their inability to cope with my new reality, having to give up work, using crutches, a wheelchair, lack of food and nutrition through inability to shop/cook/eat, waving goodbye to my future career that I was working so hard towards, severe muscular atrophy, and even loss of family once the autonomic and neurological changes hit their fastest downward slide yet.

I could bore you with details. But if you’re a fellow patient then you know the score already, and if you’re not then I think this book will contain enough detail already. Living with a progressive health condition strips away your former life and even many of the people that were in that life. It leaves you with nothing but yourself, and it is easy to wonder where even that went until we begin to separate who we are from what we used to do and who we used to know. I was me when I was able-bodied and pretty healthy, and I am still me now that I am chronically ill and disabled, it’s just the way that I express my ‘me’ which has changed. ❤

So, I started a class more owing to need as I had been unable to continue with any gym physio’ sessions for two years since my additional autonomic dysfunction issues had set in (a common co-morbidity in CRPS patients). The lack of gym physio’ was taking its toll on my body and the extent of symptoms and two years of backsliding whilst continuing to deteriorate made it clear that I wasn’t going to get back to the gym anytime soon. My boyfriend came home one day with some information about a Tai Chi class that had recently started up at the gym that I was still a member of.

It made sense to try it. I’d always wanted to learn a martial art and Tai Chi is a slow-mo version! And from a physio’ perspective it ticked a lot of boxes – gentle, slow but weight-bearing and it is good for balance, core stability, leg strength, confidence of movement, stride length etc. All good reasons to give it a whirl. So I went along and tried it. And I really enjoyed it. The teacher was also trained in fitness as well as having seriously good qualifications, experience and multiple trophies from around the world. I fell on my feet there and no mistake!

I loved the first lesson and I felt inspired to continue. The more lessons I attended the more inspired I felt. I found that Tai Chi is harder to start off with because that’s when we’re learning the basics, and as I took on board more of the principles of how the movements worked the easier and more enjoyable it got.

It no longer felt like it was the ‘other’ option to my usual gym physio’, although initially I was hoping that I would still get back to the gym eventually. Not that I would have given up the Tai Chi, mind you. It even turned out that I’m not half bad at it.

So here I am just over two years later and I now have two national gold medals at beginners level for my Yang style Tai Chi! I am currently learning Sun style and sword Tai Chi as well. I adore my new physio’s and intend to keep at it into my old age as the longer I can remain active the longer I can better manage my pain levels into later life. I would love to still be able to do a slow mo’ crescent kick in my old age! 😉

The Tai Chi classes were cut at the gym so, seeing as the only class I attended there anyway was Tai Chi, I ended my membership there and moved over to my teacher’s martial arts club. Next year I’ll be at intermediate level and I fully intend to compete again at the nationals because a) I enjoy it so much, b) it’s wonderful to achieve something when so much of the time I am so limited and c) I’m proud to be performing Tai Chi amongst able-bodied competitors despite being chronically ill and only having small amounts of physio’ time in which to do it.

Becoming ill and becoming disabled takes so much away from us, but I’ve found that what it has really done is allow me to explore another skill set that I never knew I could have. We can achieve so much more than we realise. The key is trying something out and seeing if it inspires us. Sometimes it can open up a part of what makes us who we are that maybe we thought we had lost – there it is after all, it was still there all along,… I am still me in this new form.

x

x.

If you’d like to write your own inspirational story, or perhaps a friend or family member would like to do so,… yes, I did say that… whether you are a CRPS patient or a friend or family member of a CRPS patient then feel free…. all stories are welcomed and 50 of them will be published in the book (you can choose whether to be named or anonymous). Here’s the Facebook page for the endeavour… https://www.facebook.com/InspirationalStoriesForCrpsRsd?fref=ts and email your story to RSDCRPSInspirationalStories@yahoo.com

No story is not worth telling. And writing this doesn’t have to be a daunting task because it is simply a chance to write about something which has helped you through. Maybe something has inspired you to keep at a hobby, or keep up with the physio’, or perhaps to study, or start something new, or…. Maybe you are a friend or family member who wants to write about how what inspires the CRPS patient that you know, or how you are inspired by them / their attitude / their determination / …, or how you think that they inspire others… and so on. Whatever it is, there is someone out there who will be inspired by your experience, and that’s what it’s all about, x

The key theme is ‘inspiration’.

Flex your typing fingers people, or get your favourite pen out, and have a little jot-stuff-down moment. Don’t be afraid to write, it’s a wonderful experience, and there will be an editor on hand so if you’re nervous of the brain fog kicking in or the kids/pets/postie interrupting your flow, don’t worry – it’s the story that’s the important bit, not how you write it, x          😀

I’d love to hear your comments below. What do you think of this post, of the opportunity to write and share for the book, of the book idea itself… anything, I’d love to hear your thoughts. Big loves from me, x

Housewifey organisational dilemma (where’s my birthdays book?)!

.

I cannot find my ‘birthdays book’

No matter how often I look

Searching high and searching low

In every cranny, every nook.

Still going back to the place

Under the stairs, the book-shaped space.

 .

I’ve had that book since in my teens

It’s hard to say how much it means

Cat paintings on each other page

The people met at every age

Now I want to note down dates

Of the special days of my new mates

.

I’m jotting dates on tea-stained paper

Which may seem a random caper

But I think –

“It’s got to turn up soon

It can’t be far

It’s not immune

To being found

Ere the blue moon”

.

“Or is it??”

..

x

Photo Challenge for CRPS Awareness, Day 27

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 27 – A picture of your favourite triumph in pain memory

.

Okay, I’ve already mentioned the Tai Chi medals during the challenge, so today I’m going for the academic side of things.

On the 12th June I got the results for the final research module I’d completed in March towards my Masters Degree. I passed! Which also means that I have successfully completed my MSc. Hurrah!

Yes, I’ve got degrees before but this one was different. I studied for my BA Degree straight after school. I did it because I’d always expected to continue in education and back when I was 18 the UK education system did not involve scary tuition fees so the money we owed by the end of it could be just a few grand, not the devastating amounts that students find themselves owing these days. I was lucky. And I didn’t know how lucky I was at the time. I pottered along in life, got myself a job, met a guy, changed jobs to move to the same area as him, bought a house…. all that jazz.

By the time I studied for my BSc Degree I was in lots of pain. I studied it to retrain because I had a career path in mind, I wanted to make myself useful in the world and I’d spotted a niche that I could make a difference in. During that degree my health got worse, I went from crutches to wheelchair, I went from working to having to give up work, and I went from having no clue what was wrong with me to getting a diagnosis. The diagnosis turned up in the same month as my final exam.

My health was to scupper my career plans, but I didn’t know it back then so I rolled straight on into my MSc. I studied three of the four modules then had a major life rethink, and moved to a different county to be closer to my family. My family have always been most important to me in all the world so, unsurprisingly, my assessment of my new disabled life made me decide to change everything to be nearer to them. But I still could not give up all hope of following my career path, so I moved closer to my family but not right over into the same county because my hypothetical working future had more of a chance in the inbetweeny bit of geography. So, closer to my family and more of a chance of making a positive difference in the world. Ace, right?

But I had no money left to pay for the final module. As time went by my health got worse rather than better. By the time I’d saved enough money to do the final module (that took 6 years) the neuro’ symptoms were rife. My chances of studying to the standard I had done previously were seriously compromised. My viable study time was no longer ‘just’ affected by the chronic pain issues, but also by severe autonomic issues as well as brain fog that could render my brain pretty useless for days, and even weeks, at a time. I’d be a fool to spend the money on a venture like that, right?

So, fool or just plain determined maybe, I figured that my choice was to either a) try it and fail knowing that I’d at least tried, or b) not bother and always wonder if I could have done it. The second option didn’t appeal at all. So I went for option ‘a’.

Towards the end of the time period that I had available to get my research completed and written up as a dissertation… I lost my brain. For three looooong months. Good ole CRPS, thanks a bunch! So by the time I could comprehend things properly again I was three months behind. I was in a bad position but I wasn’t going to give up. The encouragement and belief in me from my friends online was phenomenal, plus my fellow students have been such a lovely bunch of people to travel this road with, of course Magic Dude did anything he could to help me healthwise so that I could concentrate on studying, not to mention the two amazing ladies who were my research reliability coders.

On the day that I completed my dissertation I took photo’s of the event. Whether I passed or failed would not detract from the achievement of just completing the challenge and doing the best I could for my fellow patients who I hope my research can eventually help.

But I did pass. And now I’m awaiting hardcopy feedback from the university so that I can address any issues before completing the paper for submission to an Open Access journal out there somewhere. I even entertain the thought of a PhD from time to time! But one step at a time. And each achievement should be celebrated rather than rushing on past it. Life is to be lived, good moments are to be savoured, and being proud of yourself is a good thing.

Completing the challenge was an achievement. Passing was a bonus!

x

P.S. If you’re thinking about studying despite your disability I say “go for it”! In the UK there is a Disabled Students Allowance (DSA) which can help you. It applies to all universities including the Open University (if, like me, regular attendance is not an option). Here’s a post I wrote previously about studying with the help of the DSA.

Photo Challenge for CRPS Awareness, Day 21

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 21 – A picture of something you wish you could forget

.

The good memories will always be cherished in my heart, but the pain of loss is with me every single day without exception. Not that I dwell on the pain of loss, in fact I focus on the positive every single day. Over time I have improved my ways of coping with grief and confusion. But it takes time. And it never truly leaves us. We learn to live with the grief, around the grief, despite the grief. But a loss is a part of who we are as much as a joy is. It can help us to become stronger, wiser, more empathetic. It can help us to learn the hard lesson of letting something go even without really understanding what happened. To have to move forwards with no closure. To find a way. Our own way. To revisit who we are because no matter what others may incorrectly think of us it doesn’t change who we actually are. It can hurt us, spin round and round in our heads driving ourselves nuts trying to figure out what happened, but what someone else thinks does not change the reality of what we stand for, what we believe in, who we actually are. In fact it gives us the opportunity to be even more ourselves, in a way; at least that’s what helped to get me through… The process of looking at who I am made me realise that whatever I do, whoever I am, others can still see me totally differently. They can still get me wrong. And if that is the case then why be for others if they’re not going to see who I really am anyway?

So I decided to be as me as I wanted to be….

I set up the weblog to help fellow patients, I started the CRPS research to try to help through that route too. I also started learning Tai Chi for my own physio’ and my own personal enjoyment of learning it, too. I am more openly me than I have ever been before. And all things, good and bad, led me to this. I like being me, I like myself as a person, and I am proud that my morals are so solid to the core of my being. Whatever others think about me, even strangely wrong stuff (easily done when I’m in a neuro’ meltdown after all!) I am glad to be the me that I know I am and I want this life to be worth something. To make some kind of a difference simply for it’s own sake. To be useful to others during my life. When I am old I want to know I was true to myself, that I loved and helped others, and I want to feel as calmly content in my heart as this makes me feel now. But the grief will ever be there. When I first wake in the morning, when I am alone making a cup of tea in the kitchen, and more keenly on special occasions.

But despite the loss, I at least feel less distress these days. I feel sadness every day, but I am coming to accept the lack of understanding. Sometimes that’s just the way it is. But when people who love you end up thinking wrongly of you, it hurts them as well as you, and I just wish I could reassure them that it’s okay. That I’m not the person they thought I’d become, that I’m still me, and that I still love them as much as ever. I’d like to take away the pain they must feel so that they don’t have to feel it. To be able to explain the CRPS neuro’ stuff that scuppered my processing and comprehension, and how the level of brain ability varies with my emotional state.

I felt such pain that no words can describe it. I imploded utterly, I’ve never been so broken or so full of questions that I’d have no answers to. Did they implode, too? Did it hurt this badly for them, too? I wish I could forget the pain, and I wish they could, too. There was no need for it, no basis, just mucked up neuro’ disease and mis-matched contexts.

I didn’t know what picture to use for today’s CRPS awareness challenge, so I clip-arted one into existence. This is a vague representation of the vortex I found myself in.

x